I have been on Warfrin(cumadin) for over a year for DVT and Pulmonary Emboli. Today the dr. is ready for me to stop. I am very affraid! :( We did a D-Dimer test that was normal. Will do another in a month to see if it is still normal. They believe the clots came from surgery or pic line. They arent sure. I am scared, but they said that lupus patients are more prone to clotting when the lupus is active?......Do all lupus patients know what exactly made them clot, and do they still take cumadin?
Skaredy Cat Kim :shock:

ganesha

11-13-2006, 02:03 AM

Good luck kimb.
I had a DVT last Dec, and have been on Coumadin since. I am actually in a wheelchair (t11/12 spinal cord injury), so I already have risk factors there, so I can understand your fears. I would be nervous about it and would freak out too much when my legs swell a bit from edema. But I would also love to be off of it, and not stressing if I cut myself or anything. I hope everything works out for you.
Brent

Bama

11-19-2006, 06:43 PM

I had a DVT and they never did determine if it was from Lupus or from having a muscle biopsy/being on birth control pills/being sick and laying in bed for a couple weeks. I feel it was due to Lupus, but all the anti-bodies known to cause clotting problems all came back normal for me. I don't think doctors can usually say for sure what caused a clot. I was on coumadin for a long time and I had a hard time getting a doctor to let me off the medicine. It was a real pain always having my blood checked and my husband and I would like to have a baby so they finally agreed to take me off. Once I'm pregnant I'll have to take a baby asprin a day since being pregnant is a procoaguable state. I've been off coumadin for over a year and I've done just fine. I make sure I get up and walk around often. I also have Raynaud's and livedo really bad which also seem to go with people who have the APS syndrome (which is the syndrome associated with lupus and clotting). I would ask your doctor to check you for the antibodies known to cause blood clots. They did several tests on me: lupus anticoagulant, anti-phospholipid, anti-cardiolipid, and anti-Beta-glycoprotein (that last one is kind of new). They might also want to check Protein C and Protein S - if those levels are messed up you can form blood clots.